Alright HAI pump folks, I know you are plentiful on here as so many of you have recommended my wife see Dr. Kemeny @ Sloan. I'd love to hear your experience, specifically:

- Did you go through MSK or elsewhere? (both for pump install & chem admin)- How long have you been undergoing targeted chemo?- What drugs are you receiving?- Systemic chemo simultaneously? If so, what cocktail?- What kind of response have you seen?- Have you experienced any bile duct scarring?- Anything else I should know?

Thanks so much for your willingness to share. Your insight is invaluable!

1. I had my HAI pump implanted at MSK and had FUDR in the pump along with systemic chemo (Irinotecan and Xeloda) at MSK following surgery.

2. Originally I had 14 months of chemo at my local cancer center before going to MSK for a second opinion. I had an additional 9 months of chemo at MSK.

3. I am currently NED so I am not receiving any chemo. However, I have had Xeloda, Oxaliplatin, Avastin, Irinotecan, and FUDR.

4. While I was receiving FUDR in my HAI pump, I was also taking Irinotecan for 3 months and then Xeloda for another 6 months.

5. Excellent response! My liver has been clear for 5 years now. I was diagnosed with tumors in every lobe of my liver, so this is truly amazing!

6. No bile duct scaring whatsoever. I did have very elevated Alk Phos following treatment. I took Milk Thistle on the advice of an Integrative Doctor and that brought my levels back down to normal, but it did take over a year for them to come down. All my liver counts are normal now.

7. The pump isn't obvious (it only shows up in my tightest workout clothes) and since the FUDR goes straight to the liver, there are almost no side effects. They only side effects I experienced were from the systemic chemo. However, the pump does set off the metal detector at airports so it's easier to go through the whole body scanner. I just tell them I have "an implant" and there's never been a problem. They give you a card to show TSA but I've never been asked for it.

The HAI pump is truly a life saver for many patients and no one is more experienced than Dr. Kemeny and MSK in HAI treatment. I would not be here now typing out these words if not for Dr. K and her team of brilliant docs at MSK.

1- Did you go through MSK or elsewhere? (both for pump install & chem admin)2- How long have you been undergoing targeted chemo?3- What drugs are you receiving?4- Systemic chemo simultaneously? If so, what cocktail?5- What kind of response have you seen?6- Have you experienced any bile duct scarring?7- Anything else I should know?1. I started FOLFIRINOX - systemic chemo in August 2015 at MSKCC. Dr Kemeny was the oncologist, who chose my chemo. I had 4 systemic treatments, got re- scanned, and had pump implanted in October 2015 with 1 met removal. 2. I had 3 FUDR treatments + 2xFOLFOX and 1xFOLFIRI - got 1 large met from my left lobe removed, than 3 more FUDR + 7xFOLFIRI- surgery- mets from right lobe removed. After surgery in May 2016, I had 5xFUDR and 10x5FU until October 20163. Currently I take only Ursodiol and Cimetidine, no chemo4=25. I had 95% pathologic response after systremic chemo and 100% after FUDR. Clean scan in February 20176. No bile duct scarring until now, temporary liver enzymes increase in 12/2015, enzymes down after switching oxaliplatin with irinotecan, flushing pump with steroids 2x, adding ursodiol BID orally7. Dr Kemeny knows more about colon cancer than anybody else. She has great experience with the pump, fantastic surgeons, knows more than anybody else about current treatments, there is nobody who has guts to refuse her. She can get surgery even for patients with disseminated cancer.

junderhill wrote:Alright HAI pump folks, I know you are plentiful on here as so many of you have recommended my wife see Dr. Kemeny @ Sloan. I'd love to hear your experience, specifically:

- Did you go through MSK or elsewhere? (both for pump install & chem admin)- How long have you been undergoing targeted chemo?- What drugs are you receiving?- Systemic chemo simultaneously? If so, what cocktail?- What kind of response have you seen?- Have you experienced any bile duct scarring?- Anything else I should know?

Thanks so much for your willingness to share. Your insight is invaluable!

hello!

For my DH:1- YES -MSK and Dr K for HAI pump! But systemic chemo continued locally just for travel convenience2- 11 months of systemic chemo 2/2017 to 12/2017 and 5 months FUDR via pump 8/2017 to 12/20173 & 4 - no chemo currently - just Ursodiol capsule for liver -prior Avastin, 5FU, FOLFOX5- NED as of 7/2017 post liver resection surgery and pump install - next scan 3/22/176- no scarring7-keep the faith, stay strong and get to Dr K ASAP

Julie who replied above was my inspiration from when I first found ColonTalk and I had the pleasure of meeting Mariane at MSK.Let us know any other questions as they come up and how things go.

I went to MSK for the pump install (and colon primary resection), didn't have Dr K as my onc, but a colleague of hers who was fantastic (as were the colon and liver surgeons I had.) I was lucky to live less than 4 hours away, but knowing what I now know, I would have gladly taken a plane if I needed to. Good news is that draining the FUDR after 2 weeks and refilling with saline was not too difficult, so my local onc agreed to learn to do the drainage, and also bi-weekly systemic FOLFIRI at the same time.

At dx I had over half my liver cancerous, and 2 portal lymph nodes; no lung involvement. I didn't find out about HAI until halfway through 12 txs of FOLFIRI+Avastin, so MSK told me to wait to see them til all 12 were done (though it can be slightly more effective in many cases to do the pump as first-line.). Near-miraculous reduction from first line for me; over 90% reduction in size of mets and CEA - but still some live cancer.

About 1.5 years of HAI and FOLFIRI, all mets in liver calcified on scans, unsure if any cancer cells left, but liver numbers (AST, ALT and AlkPhos) got too high to continue treatment, and remain high to this day (though I can't tell any bad effects from it). I also had bile duct damage which caused skyrocketing liver #s including bilirubin. Another great MSK interventional radiology surgeon found the issue on a scan (my local onc couldn't), and she fixed it with a stent...which had to be replaced / cleaned out 2 more times...before they finally said that, due to my good cancer prognosis otherwise, they wanted to do a permanent biliary bypass procedure. That worked great, brought bilirubin down and stabilized other liver #s.

I stayed off chemo for another year or so, then my CEA started creeping up so we did a PET and found one pesky liver met was still active. It was burnt out with RFA at MSK, and I've been in the clear for the past 2 years since (knock on wood).

Lastly-I have been absolutely blessed beyond belief to be here 7 years after getting a 2-yr life expectancy from my local onc. I am so very thankful, and I really wish everyone undergoing treatment would do even half as well as I did. But not everyone is a candidate for HAI, and even then, not everyone will have a dramatically positive response. That said, if it weren't for HAI, I firmly believe I wouldn't be here today. By making me aware of this treatment option, the folks on this board, in essence, saved my life. You are doing a great thing by taking "control" of your family's cancer challenge, and educating yourselves on your options.

So PLEASE(!!!) do not simply take as gospel the opinion you will hear from the vast majority of oncologists that are not personally experienced with HAI...because they will almost certainly "poo-poo" its potential effectiveness. I, and many others here, will testify that it can be life-changing under the right circumstances. Many times I look at the joyful smile of my 2-year old daughter and realize that miracles do happen. Regardless of what treatment choice you make, here's to you and your wife finding your own miracle in this difficult time!

Don't hesitate to PM if you'd like to talk about any of this further.-Chip